I read a lot of things about the importance of not infantilizing our disabled children. I understand it. I also advocate for allowing them to enjoy what they enjoy while also exposing them to age-appropriate (whatever that means) items of enjoyment.

For instance, Kiran still loves watching Daniel Tiger and Sesame Street. He also enjoys animated, colorful, musical movies (and hey, so do I). But we also expose him to shows and movies that ten year old boys might enjoy, like superhero movies.

We are currently watching Bear in the Big Blue House on Disney +. He enjoys it, but honestly? It has become the show I put on at the end of a day when I just need something comforting. I especially love the end of every episode, when they recap their day and sing the song with Luna the Moon.

It’s okay if you don’t know what I mean. What I will say is simply this: I am a 42 year old grown woman, and this show, meant for toddlers and preschoolers, brings me joy and comfort at the end of a hard day.

This morning, I think the culmination of all of the emotions and trauma of the last several days came to a head for me, very unexpectedly I might add. Much like I always burst into tears AFTER I hear that the procedure went well (because, I must hold it together before and while serious things are happening), I think the panic and anxiety of everything finally came out today, after a bit of distance from it all.

Reflecting back on this morning, I am pretty sure I had a panic attack. This would mark only the third I’ve had in my lifetime. I was describing it while it was happening as trying to keep a panic attack at bay, but I think I was really just trying to breathe through an active one.

I don’t like how it makes me feel – weak and out-of-control – and to really put a cherry on top of the ridiculous sundae, it happened about fifteen minutes after watching a sermon about how God is with us through the storms in our life.

I share only because I think it’s important to share. This is the piece of life that can’t be wrapped up in a neat little bow, the shadows that don’t always come with a silver lining.

So, you know what? Kiran and I are watching our comfort show. And if it makes us feel calm, it IS age-appropriate.

I continue to be amazed at how easy-going and relaxed Kiran is during appointments and procedures. We have been very lucky with how stable he has been; I can’t even recall the last time we had to spend the night in the hospital. We have had same-day procedures (his salivary gland removal a couple years back, for instance), but I’m not sure we’ve been hospitalized since his open heart surgery (Is that possible?! I should really read back and check)

Kiran’s body – his heart – is also really blessing us with a lot of time. Everyone was impressed with the fact he hadn’t even been to the cath lab since 2017, and that his conduit has been in place for almost ten years without requiring an intervention (until now, of course). As I mentioned, we also lucked out that the simplest solution was the one that worked. They were able to successfully balloon the conduit, making it bigger to provide more sufficient bloodflow. What happens over time is calcium builds up inside the conduit, which narrows the blood’s pathway. This increases the pressure which can cause the heart (in Kiran’s case, the right ventricle) to work harder. This pressure, in addition to other pointers (like thickening of the wall of the right ventricle, which would indicate the muscle is working harder and “bulking up”) is what we have been monitoring at his regular cardiac appointments.

These ballooning procedures typically provide relief for one to three years. The pediatric cardiology interventionist, Dr. S., was outstanding. He explained everything very well and was really good at addressing the risks and concerns while also being very encouraging and positive. We all felt like Kiran was in excellent hands, and he was. Dr. S. talked with Kiran’s cardiologist, Dr. R. following the procedure, and they agreed to a tentative plan moving forward.

The goal has always been to prolong the need for the next open heart surgery. This will be required when we have to replace the conduit, because that cannot be done in the cath lab (yet). I am pretty sure when we were first discussing Kiran’s heart journey (when he was an infant), valves also could not be replaced in the cath lab. That has since changed; it was one of the scenarios that could have occurred on Thursday if deemed necessary.

Anyway, we now hopefully have one to three years of heart stability. When the pressures and other indicators point to the need for the next intervention, we will plan to go into the cath lab with the intention of placing a stent and replacing the valve. Ideally, Kiran would grow to be 10-15 pounds heavier before this is necessary, as that makes valve placement less risky. As long as the conduit continues to hold up, this intervention would likely get Kiran into his adult body before requiring his next open heart surgery to replace the conduit.

Although this timeframe is tighter than I would like, I recognize we were very lucky to make it almost ten years between heart interventions. And it’s good for my brain to have a more solid plan in place. I like knowing what to expect, and I feel very good about Kiran’s cardiac team.

We got home yesterday afternoon. Kiran continues to recover well. He took a nap, got some good nutrition in him, got out what his body needed to get out, and slept from 7:00 pm to after 8:00 am this morning. We are resting today, hydrating, addressing some after-anesthesia needs, and getting in lots of snuggles. He is in good spirits and doesn’t seem to be in any pain today.

Prayers were answered with this situation, and my heart feels much more at peace about Kiran’s continued heart journey. This kid is astounding, and he is truly my hero.

The waiting is the hardest part. Thankfully, that part is *almost* over for me, as I get to help Kiran stay still during his “flat time” – the time after the cath procedure (about an hour) during which he is still mildly sedated so as to keep still and lie flat.

Kiran is in the recovery area. They took him back for the cath lab procedure just before 10 am this morning, and we just wrapped up our consult with the pediatric cardiology interventionist. He was extremely thorough, kind, and explained everything very well (at least to me, as I have a pretty solid background in Kiran’s heart ten years in).

They ballooned the conduit, and it worked well enough that it’s the only intervention they deemed necessary. They still want to keep him overnight to monitor a slight, self-contained injury to the conduit and a vein that didn’t love having the items poked through it.

The conduit is showing some “I wouldn’t call that mild” leakage, meaning the valve is allowing blood to flow backwards back into the right ventricle. However, the right ventricle’s size does not appear significantly impacted by the amount yet. And apparently, with the right ventricle, we like leakage more than obstructions.

So they were able to balloon the conduit for better flow and lower pressures. This will buy us more time for the next heart intervention. With any luck at all, the conduit will stay performing well, Kiran will gain 10-15 more pounds, and we will opt to place a stent and valve in the cath lab in the next year or two (or three or four … I’d like it to be a longer timeline).

The goal and hope is still for only one more open heart surgery, when the conduit needs replaced.

Hoping to be called back to my boy soon so I’m gonna leave it there for now. What a boy!

Kiran and I went to the summer flicks movie at the movie theater yesterday. We watched DogMan. We’ve been reading several of the books and have enjoyed them. Kiran has actually seen the movie at home, recently, but going to the theater in the summer is one of the things we enjoy doing together.

In situations like this (movie theater, church, theater performance, etc), I do my best to manage Kiran’s loud vocalizations. He vocalizes excitedly, and it can be somewhat often and prolonged. I teeter-totter back-and-forth on the fact he is absolutely allowed to exist in these spaces and be who he is, but I also try to teach him when it’s appropriate to be loud and when we need to be quiet and listen. It’s an ongoing education, but we do actively work on it.

He was rather excited for periods of this movie, and he had some loud vocalizations. We were whispering about it, and I was doing some of the things I have found helpful (let him stand for a little bit, apply pressure on his chest, let him sit in my lap).

And then, for the first time I have ever experienced (though I am sure it is not the first time it has happened), a child made fun of my son. After two vocalizations, I heard a boy somewhere in the theater mimic the noises Kiran had made.

And it broke my heart.

It only happened twice – and Kiran definitely had multiple other things to say after it happened – so I can only assume the adult with the child shut it down quickly. I am thankful for that.

I am also thankful – always – that these things don’t faze Kiran. I honestly don’t think he processes or understands that someone is making fun of him. If anything, he’d probably think this child was playing and wanted to chat. And this sweet, innocent boy would just try to make friends.

So, I get the privilege and honor of carrying this heartbreak. And I am reminded of why it’s so important to continue being out in the community, even when it’s not easy.